I really DON’T want to be gloomy all the time. I DO believe there is hope for positive change in thyroid therapy today. But now and then we have to consider “what is the worst that could happen?”
I want to show you where we are now, where we could all be headed if we don’t stand up and push back.
If you are unaware of the turmoil going on in thyroid therapy today, or you want an update from my point of view, let me inform you.
We could indeed be headed for a Thyroid Therapy Dystopia like the one that exists in the United Kingdom today.
How far along this road do you think we are in Canada?
Thyroid patients who have not yet participated in online patient communities might only know about their own thyroid therapy, and perhaps the therapy of some friends and family members.
What many thyroid patients might not see is a system in which some doctors, medical associations, and colleges of physicians and surgeons are openly attacking T3-based pharmaceuticals. This has been going on for decades.
Doctors have long been told by authorities “no evidence exists to support any other therapy but synthetic Levothyroxine (L-T4).”
Many choose to believe authority and not look for any evidence.
And somehow they also believe “no evidence” equals “imminent harm.”
Doctors participate in their own communities and share stories. They probably share stories about their difficult and whiny thyroid patients who consult Dr. Google or participate in patient communities.
Some health professionals are being whipped up into a prejudicial self-righteous frenzy by imaginary fears of an adverse outcome in people who take thyroid medications that include T3 hormone.
Out of an unreasonable fear that giving T3 will make us go hypERthyroid and give us palpitations, tiny synthetic T3 doses are doled out like gold nuggets to the few who beg and ask. It’s just a placebo, many think. But maybe it will stop the whining.
Desiccated thyroid medication is the object of the greatest fury and ridicule. Some doctors seem to think prescribing it is equivalent to believing the earth is flat.
My own mother’s doctor fired her (refused to treat her anymore) because she went to another doctor who prescribed her desiccated thyroid. That’s just one of too many examples. Oh, the stories patients tell each other on these online forums!
If you want an example of the worst sort of vitriolic medical attacks against a category of pharmaceutical, google “Quackwatch” and “desiccated thyroid.” They don’t deserve the honor of publishing a link to their website.
If you prefer to read attacks cloaked in more temperate and scientific language, consult the American Thyroid Association’s 2012 guidelines for hypothyroid therapy and related publications in 2014. (1-3) Their prejudicial rhetoric often points to small studies or individual cases of patients who have had adverse effects or have been overdosed by mistake or with the intent of self-harm. See our previous post that gives quotations from the 2012 ATA guidelines and analyzes them: “Thyroid pharmaceutical prejudice: How it works.”
POLICING MEDICAL CONFORMITY
Many good and happy(?) thyroid patients are not aware that anything other than synthetic T4 exists to treat hypothyroidism, and they believe that their TSH number tells them if their medication is dosed properly.
This is because most doctors conform. Of course they put a patient on T4 monotherapy to start with, because that is what their education, the guidelines, and the flowcharts say.
But then there are always some non-conformist doctors.
These non-conformists sometimes become our precious, heroic, few good thyroid doctors.
These innovative health professionals look beyond the confines of TSH and L-T4 to discover how to fit a therapy to the patient, rather than force all patients to fit one therapy.
These doctors have used their intelligence and critical thinking skills. Some are older and know the history of thyroid therapy used to involve a lot more than TSH and L-T4. Some have invested a lot of time and effort beyond medical school to learn what they know.
They are absolutely correct when they suspect mere TSH normalization as not good enough and L-T4 does not work best for every hypothyroid patient.
But their careers are at risk.
I only need to name the current example of Dr. Ron Matsusaki. I hope you’ve read our outcry against this medical injustice. His thyroid clinic in Nova Scotia was forced to close in April 2019. His patients are angry and afraid, and we can only imagine how he might feel.
Pharmaceutical prejudice is at the root of this attack on Dr. Matsusaki and his patients.
If he did all he he could do to optimize thyroid hormone levels while administering T4 monotherapy, there would not be a clinic closure.
If he prescribed desiccated thyroid without being so vocal and scientific about it, and horror of horrors, popular among thyroid patients, he would not have come to the attention of the authorities. Once he came to their attention, it was inevitable that someone would feel offended that he was encroaching on their medical specialization.
CANADIAN MEDICAL CULTURE
Canadians love order, calm, and equality. Maybe it’s part of our colonial tradition of trust in benevolent authority.
Our culture teaches us to believe that if you are worthy, you’ll be promoted to power. Otherwise, just go about your business, be nice, say sorry if you bump into anyone by mistake in the hallway, and don’t make a fuss.
Nobody’s allowed to stick their head too high above the masses, or they risk it getting cut off. It would not be fair if only some patients in Nova Scotia got better thyroid care, so we better ensure everyone is equal. If all can’t get it, then nobody should be allowed to get it.
Peace and equality can come at the price of deferring to selfish power and blind tradition. We can’t have anyone creating doubts about the safety and efficacy of synthetic T4 monotherapy for all and TSH monotesting for all, can we?
This is how pharmaceutical prejudice has taken root in our Canadian culture. We’re good at making rules and then making sure everyone obediently follows them.
It leads to medical surveillance and punishment.
It has a history in Canada.
Read about Dr. David Derry in British Columbia in the early 2000s, (7) who had even published articles and interviews about safely and effectively supervising desiccated thyroid therapy. His “temporary” license suspension ended up being permanent. Nothing patients could say or do could remove the god-like charges against him or enter into secret debates and consultations. That was in the early days of the internet. Maybe patients can do more now to support Dr. Matsusaki and his patients. Ideas?
Other Canadian doctors not named publicly in the news (whom I therefore can’t name) have been forced into early retirement in part due to their prescription of desiccated thyroid, often together with the horrible sin of ordering those $10-each thyroid hormone tests that are necessary to dose it safely and effectively.
RIGGING THE MARKETPLACE
The prejudice against T3-based pharmaceuticals is an indirect way by which medical associations imbalance the thyroid hormone marketplace.
All these naysayers have to say, over and over, is ” ___ is not evidence-based medicine.” (Just fill in the blank with anything currently unfashionable.)
This is their Jedi mind trick. Their mantra.
When it comes to dissing dessicated thyroid, they’re merely echoing the 2012 American Thyroid Association (ATA) guidelines, or echoing those who echo them, without engaging in deeper critical thinking and inquiry. (Read our earlier post: Thyroid pharmaceutical prejudice: How it works)
This viral prejudice, backed by ATA authority, is reducing the number of prescriptions for T3-based meds, driving up their prices, and contributing to shortages and distribution problems that we have been experiencing in Canada for the past decade or more.
Meanwhile, there are always many brands of levothyroxine (synthetic T4) available, and it is never on shortage, and it’s always cheap.
WHERE ARE WE HEADED?
Where are Canada and other countries headed if pharmaceutical prejudice continues to divide us and conquer us and discourage us so that we remain in a state of passive conformity?
We are already moving further down the path of undetectable and uncurable chronic hypoT3ism for the masses.
Eventually, only the rich will be able to access and afford optimized T3 hormone levels.
Only they will be able to afford privatized doctors and travel long distances to where they are located, perhaps in a few countries and major cities, where such outside-the-system doctors may still be granted special exceptions to order and charge patients for Free T3 and Free T4 tests from special laboratories.
Only these doctors will have the freedom to prescribe T3 in ratios and amounts that go beyond the narrow 15:1 T4:T3 ratio that guidelines will enforce for the masses.
Only rich patients will be able to pay for the costly T3 medication once it is only offered by a dwindling number of global pharmaceutical companies that control its manufacture in agreement with the governments they make win-win deals with.
Pharmaceutical companies continually take advantage of “orphaned” medications. Watch the “Drug short” episode of the “Dirty Money” series on Netflix.
Drugs can go on shortage now and then by choice, not just by chance. It could be a way to ensure only the most committed and desperate patients remain on it, or to wait until the pharmacy shelves run out of old stock before reintroducing it.
If a drug has very low sales, it can be declared an orphan medication. The sales will be so low that a company can claim “market forces” alone justify a huge price hike. It seems like the invisible hand of natural economics, but it’s just a long-term strategy for profit. Those few patients will foot the bill.
Price increases can eventually lead to the most unethical, economically-motivated prohibitions against T3 therapy that we see happening in the UK today.
THE UK THYROID THERAPY DYSTOPIA
If you think it’s costly and challenging to get synthetic T3 or Desiccated Thyroid in Canada, consider your UK brothers and sisters.
In the UK, a Canadian pharmaceutical company, once called Concordia and now renamed Advanz, established a generic drug monopoly and exploited a loophole that opened in the late 2000s. They hiked the price of synthetic T3 (liothyronine) 6000% over ten years while the National Health Service did nothing to protest it. (4)
Now the UK health regional authorities (called Clinical Commissioning Groups, CCGs) are saying they can’t afford T3 prescriptions anymore.
Thyroid patients are being taken off T3 therapy, or their doses are being restricted, or they are not permitted access to a trial to begin it. They are stuck between endocrinologists, GPs and these CCGs fighting over who should pay and who should bear the authority and the risk of prescribing it. Pseudo-scientific excuses for reducing T3 doses and weaning people off T3 thinly veil the economic and interprofessional battles.
Imagine the panic you would feel as a T3-dependent thyroid patient. An isolated lower FT3 in the presence of normalized TSH and higher FT4 can be a direct medical cause of depression and anxiety. Weaning off T3 could drive some patients to contemplate suicide, quit work, or withdraw from society. It is leading many to a life of crushing fatigue and poor health. It causes many patients fear, stress and insecurity.
Stories of patient suffering were collected into the Liothyronine Dossier 2018, whose link and the following quotations are found on the British Thyroid Foundation website:
Patients who have had liothyronine withdrawn said
“Like thousands of other UK patients, I cannot have a prescription for T3 from my GP or my endocrinologist. I am left in a frightening place.”
“Life without liothyronine for me is no life at all.”
“I feel completely abandoned by the National Health Service.” (5)
The number of UK thyroid organizations involved in compiling this dossier shows the extent of the crisis: British Thyroid Association, British Thyroid Foundation, Improve Thyroid Treatment Campaign Group, Midlands Thyroid Support Group, Thyroid Support Group Norfolk, Thyroid Patient Advocacy, The Thyroid Trust, Thyroid UK.
Today in 2019, other companies have joined the T3 marketplace, but it hasn’t reduced the cost enough.
Meanwhile, prices for T3 in other countries like Mexico and Turkey are dirt cheap, so patients often resort to pharmaceutical tourism, internet purchases of medication, and self-supervised thyroid therapy.
This means only the patients who can’t afford that, or those who truly care for their peers, will fight hard for the right to access T3 hormone under the NHS.
Desiccated thyroid isn’t an option for most, either.
In earlier waves of pharmaceutical prejudice, the UK medical system had denied patients access to the cheaper alternative of desiccated thyroid therapy that could meet the T3 hormone needs of part of this suffering population. Now some merciful people are reconsidering that policy.
Today, if you can obtain a prescription for it (good luck), the handful of pharmacies that hold Desiccated Thyroid stock can be listed on a short web page on Thyroid UK. (6) The page explains this:
“If you have been given a prescription (NHS or private) for natural desiccated thyroid (NDT) or liothyronine (T3) you may find that you have trouble getting it dispensed. Some community pharmacies may not have seen a prescription for these medications before and may struggle to obtain them from their normal suppliers.”
Is this what Canadians want to imitate? Do you believe in benevolent authority?
This is the problem that a **Canadian** pharmaceutical company conspired to create, by taking advantage of thyroid hormone pharmaceutical prejudice.
We can’t sit on our hands and just feel pitiful at a distance. Canadians have engaged in these evil, immoral things, and it can get worse.
– Tania S. Smith
1) Garber, J. R., Cobin, R. H., Gharib, H., Hennessey, J. V., Klein, I. L., Mechanick, J. I., … Woeber, K. A. (2012). Clinical practice guidelines for hypothyroidism in adults: Cosponsored by the American Association of Clinical Endocrinologists and the American Thyroid Association. Endocrine Practice, 18(6), 988–1028. https://doi.org/10.4158/EP12280.GL
2) Biondi, B., & Wartofsky, L. (2014). Treatment with thyroid hormone. Endocrine Reviews, 35(3), 433. https://doi.org/doi: 10.1210/er.2013-1083
3) Jonklaas, J., Bianco, A. C., Bauer, A. J., Burman, K. D., Cappola, A. R., Celi, F. S., … Sawka, A. M. (2014). Guidelines for the Treatment of Hypothyroidism: Prepared by the American Thyroid Association Task Force on Thyroid Hormone Replacement. Thyroid, 24(12), 1670–1751. https://doi.org/10.1089/thy.2014.0028
4) Kollewe, J. (2017, November 21). Drug firm Concordia overcharged NHS with 6,000% price rise, says watchdog. The Guardian. Retrieved from https://www.theguardian.com/business/2017/nov/21/drug-firm-concordia-overcharged-nhs-with-6000-price-rise
5) British Thyroid Foundation. (n.d.). Liothyronine Dossier 2018. Retrieved May 6, 2019, from http://www.btf-thyroid.org/information/liothyronine/397-liothyronine-dossier-2018
6) Thyroid UK. (n.d.). Where to get Desiccated Thyroid Hormone. Retrieved May 6, 2019, from http://www.thyroiduk.org.uk/tuk/treatment/where_to_get_desiccated.html
7) Breast Iodine Thyroid Effectiveness Society (BITES). (2004, October 11). Dr. David Derry [The doctor, The patients; The College]. Retrieved April 21, 2019, from http://web.archive.org/web/20041011010949/http://www.bites-medical.org/dderry.html